Tips For Friends, Family And Co-Workers Of People Who Suffer With Fibromyalgia

"Don't Wait Another Moment! Improve Relationships Between Friends, Co-workers And Those With FMS Now!" Having experienced the symptoms of FMS since 1978 [even before it was recognized by most as a legitimate disorder] I have had to deal with the reactions of friends, family and co-workers to my illness. I would say that without a doubt that if you do not know someone with FM, you do not understand it....not really. If you are acquainted with someone with , there are certain things that they desperately need you to know. These are several points and suggestions [tips] I would like to make to those who know of someone with fibromyalgia [FMS]. Invalidation And Disbelief "You look fine to me." I do not know how many times I have heard this over the years. This is why fibromyalgia is sometimes referred to as "The Invisible Illness". Please recognize that "seeing is not always believing!". Looks can be deceiving, especially with people with FM. People sometimes think that people with fibromyalgia are just lazy or depressed. Don't even think that, "If they just push themselves a bit, they can do anything the rest of us can do", just because they don't look sick! The fact of the matter is that fibromyalgia is a medical illness, not a psychiatric one, and all the wishing or pushing in the world will not help. As often implied, it is not "all in their heads". I have often replied when a doctor or friend asks me how I am feeling to look deep into my eyes, and take a gander at my soul. Then and only then will they possibly comprehend how I feel. "Oh, I've felt that way at times. I get tired and achy also!" It is mainly people saying "I've had that too!" which can be devastating. Please do not feel tempted to find common ground with those who have fibromyalgia. You may be well intentioned but saying "I've had that too!" is as if I, Bill Wallmuller, hadn't lived 31 years before getting this illness and as if I didn't know the difference between what I have now and what I was like before. I....we are not "making a mountain out of a mole hill". No need to suggest that all I...we need is some more rest. "Have you tried the latest FM treatment of choice?" Friends and family and [yes, even fellow people with fibromyalgia] sometimes suggest using, with good intentions, any and all alternative medical treatments in existence. When doing so they manage to imply, usually without intending to, that because we with FM do not follow their advice, that it is our own fault we are sick. Poppycock! Please don't put this guilt trip on us with fibromyalgia. The last thing a person with FM needs is to feel blamed for being ill. Fibromyalgia - The Better We Inform Ourselves, The Better We Can Manage Communication With Others Having Fibromyalgia. A person with fibromyalgia is always better off being able to communicate with others with the same disorder. There is beneficial relief in sharing one's experiences with others with FM, hearing what helps for some, and what doesn't help for others, etc. Attending Support Group Meetings if possible is ideal. Sometimes though, support groups are not always near by and convenient. This is where online support in the form of Message Boards, Chat Rooms and just reading Web Pages about other peoples experiences, can be a blessing to us with FM. If you are acquainted with anyone with fibromyalgia, and they do not have access to or the finances available to obtain a computer, you can really show your concern by helping them to obtain this important channel of support. One does not have to spend a lot of money today on a basic computer capable of surfing the net and getting access to an Internet Service Provider [hint: maybe you could sign them on as an identity on your ISP account]. Even the most computer illiterate person can learn enough to be able to contact some good well intentioned FM Chat Rooms and FM Message Boards. I have found that having a computer for the last 10 years and being able to contact, communicate, research and exchange ideas with others with fibromyalgia to be most beneficial. I hope this material was helpful to the friends, family and co-workers who know someone with fibromyalgia. We plan to bring more tips and points of view on this subject at a future date.

8 comments:

XSarenkaX said...

This is good advice and comforting for a fibromite to read, even if the people we really want reading it never do see it. Thanks for posting this.

Luzinha said...

dear, I think you have a great idea publishing this post! probably I have this illness, and I'm happy to know about it! thank you!

your lovely!

all the best for you!

Anonymous said...

Hi, mama wanted me to leave a comment of thanks for wonderful words of wisdom! We sure have heard it all, especially, but you look so good today? I thought you were sick last week? etc. etc. Have you ever read the letter to the normals? its good!
Purrrs to you from Honeybell and mama

Cinda Crawford said...

You've posted some valuable info, especially about helping other people get computers. Most towns of any size have groups that help people with such tasks. Having a computer helps the home-bound keep in touch with the world. Here in Roanoke, VA, it's a group of retired GE engineers. If you get online any at all, you're all welcomed to pick up more tips at my blog and podcast, the Health Matters Show at http://www.healthmattersshow.com Keep up the good work :-)) Cinda Crawford

Jen said...

What a great post! It's so easy to forget that other fibromites go through people doing this too.

*Hugs* I hope things are going well for you!

Anonymous said...

Your FM post was a feel good read to us suffers! Sometimes you just feel like you're going through life downn a very lonely path but reading these kinds of things connects you to others who probably feel the same way. It's just too bad that the people we would like to be more informed never will. My advice to other FM sufferers... get up, get dressed and live your life no matter what!

PURPLEIRIS said...

This is an awesome post! You are so right about fellow fibromites posting "the ultimate cure".
We are all so different yet alike!
What works for some may not help you at all. I am always willing to try alternative methods. Some help me some don't.
Thank you for posting this!
Linda

RosalindawithDT said...

Thanks for this info. I hope you see better days ahead.
Rosalinda Vargas
www.discoverytoyslink.com/rosalinda